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The sexual abuse question

Discussion in 'Latest ME/CFS Research' started by Cort, Aug 7, 2009.

  1. susan

    susan Senior Member

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    This subject irritates me too but my Doctor who had 600 CFS/FM patients told me a large percentage of his patients had been sexually abused. Now this guy had the illness himself and fought tooth and nail with Social Security and hospitals and anyone who stood in the way of his patients. He gained no benefit from telling me this because he had the illness too.
     
  2. Dolphin

    Dolphin Senior Member

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    Personally I find it a bit strange that it would be brought up in an ordinary medical consultation.

    Perhaps some people with the illness are more inclined to bring it up than the general population - I know lots and lots of things (not particular stressful at the time) have popped into my head since I become ill from the time before I was ill (and sometimes they can pop up again when really they weren't very exciting or stressful at the time e.g. somebody giving out to me for pronouncing their name wrong). So I imagine if somebody did have a particular traumatic past, maybe it would be popping into one's head a lot with the illness?
     
  3. nina_online

    nina_online

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    Causation??

    Even if there is a link, doesn't mean it's causation.

    [RANT: I hate to sound like a conspiracy theorist, but after reading David Kirby's "Evidence of Harm" I don't trust the CDC one bit. Anything that takes the focus off of environmental toxins, the medical industrial industry or anything else in the public realm and moves it into the personal takes a great load off of the CDC.]

    By the way, how do they explain the increase in CFS over time? Is there more sexual abuse now that decades ago (when, as a society, we spoke of it less and had fewer resources to protect children)? And how doe they explain CFS outbreaks like Incline Village?

    If the data are correct, I guess the most likely explanation is that people who were sexually abused are more likely to have HPA and CNS issues and that becomes part of the umbrella of illnesses we call CFS. Still, there is no causation and because of the complexity of even defining what CFS is, it does more harm than good to tout this as an important discovery.
     
  4. Freddd

    Freddd Senior Member

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    Let's consider Freud's early career and how it was almost cut short. He was all set to publish his findings that a large proportion of the men of Vienna were sexually abusing their daughters. He was told in no uncertain terms that it was not possible and that if he published that story they would ruin him. So he came up with the theory that the females were sufferring all this damage from imagining all these sexual things with their fathers and other males like uncles and brothers.

    So now 100 years later we find that a lot of men have indeed been sexually abusing their daughters the past 100 years. He also interpreted that this trauma would cause stocking and glove distribution neuropathy in later life called conversion disorder. Now we know that stocking and glove pattern neuropathy is characteristic of b12 deficiency neuropathies. And of course all of the symptoms of FMS/CFS/CFIDS/ME are a subset of b12, methytlfolate and cofactor deficiency symptoms.

    It's amazing what theories will come up to explain a mystery disease, or a set of stealth deficiency diseases.

    If 93% of the population eats tomatoes and/or tomato products then 93% of murderers, rapists, pianists, mathematicians etc also eat them. If 1/3 of the female population or whatever the number is has been sexually abused there are going to be a lot in any given group including CFS/FMS etc. Looking at it that way I'm amazed that almost none of the sexually abused women I know don't also have cfs/fms.

    I think that sexual abuse is more recognized and spoken about now. I don't know that incidence has actually gone up whereas the increase in CFS/FMS maps well to certain nutritional changes and trends.
     
  5. jenbooks

    jenbooks Guest

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    Autism skyrocketed with vaccines especially hepatitis B given to newborns. You see a clear demarcation on charts of incidence.

    I wonder if CFS skyrocketed after baby boomers were 1) given the polio vaccine which was contaminated with monkey virus 2) given mercury amalgams out the wazoo often after braces (like me) poisoning countless people who didn't have superb detox genetically 3) bottle fed instead of the all nourishing breastmilk that so protects mother and child---bottle formula was grossly inadequate 4) add in some bioweaponized bugs and covert testing on our population and there you have it. An epidemic.

    Oops--let me not forget lousy food that was part of the modernization of America. I grew up on hamburger helper, tuna casserole with potato chip topping and campbells mushroom soup as the ingredients, iceberg lettuce, poptarts, etc etc. CRAP diet.
     
  6. Dolphin

    Dolphin Senior Member

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    I'm not sure these findings can be dismissed as easily as this as they did have a control group.

    But the definition used in the Heim studies (2006 and 2009) is rubbish rubbish rubbish - it's the empirical definition (Reeves 2005). It picks all sorts. Personally I don't think any studies using this definition should be seen as CFS studies as they definite is so bad and so broad.
     
  7. Freddd

    Freddd Senior Member

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    Hi Jenbooks,

    YES! A crapola diet. Virtually 100% lacking in real b12 and most other nutrients. I was raised as a baby on cows milk formula. Just as well as soy would have killed me not having any real b12 at all. My wife and I tried to do better with our kids. If we had tuna casserole it was with wheat germ topping and whole wheat noodles, lots of tuna (mercury hazard of tuna was unknown then) and basically from scratch ingrediants including vegetables. In garden season we tried to give the kids several servings from the garden each day as I am having today; blackberries, swiss chard, yellow crockneck squash, cucumber and tomatoes, lots of tomatoes. I never served iceberg lettace but that is all my mother ever bought. My wife's mother served the most salad her husband would tolerate, mostly what might be called a formalities salad; not enough to be nutritional but could say you had it. It was like 2 cherry tomatoes, 1 slice of cucumber, less than a carrot stick worth of carrot, the same in celery on 3 leaves of iceberg. She served salad in 4 ounce sidedish bowls with dressing, I serve it in jumbo salad bowels nude with fresh herbs and seasonings and Redmond RealSalt or Vegesal. I always thought something was wrong when a cucumber lasted a week for a family of 4 or 5 as I always enjoyed slicing it into quarter sections and eating the whole thing, a nice fresh crisp one anyway.

    Another thing I NEVER bought no matter what yowl my kids put up were sugar cereals or hamburger helper. It's not easy raising kids to eat well these days. I sure didn't eat well as a kid. And my mother made sure of it. She appeared to suffer all sorts of b12 deficiency symptoms (adopted, not related) including b12 specific anorexia which she tried to enforce on only me amongst the children, the one with b12 problems. She ended up hospitalized with psychosis on and off for 8 years until one psychiatrist put her on vitamins and a high meat diet instead of antipsychotic drugs. Clearly he was right as it worked like a charm.
     
  8. jenbooks

    jenbooks Guest

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    Having your own garden is ideal. It's great you have one.
     
  9. Freddd

    Freddd Senior Member

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    Hi Jenbooks,

    Yes, I'm fortunate to have the room for a garden. It has also helped my physical rehabilitation considerably. It gives me something worthwhile to do with muscles instead of the gym. The backberry thicket that has taken over the stream bank from a couple of plants 6 years ago now produces more blackberries than 2 of us care to eat for 6 weeks. I'm planting different varieties of raspberry hoping to find one or two that do as well in our soil. My parrot, Zeus likes to play a game with us as we pick blackberries. He sits in his tree on the lawn and calls out for "crackers" which in this case are blackberries, while we pick, and gets fed one every few minutes, making a terrible mess with them.
     
  10. jenbooks

    jenbooks Guest

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    Ha ha ha, Freddd. Love the Zeus story. Send me some of your blackberries!
     
  11. Cort

    Cort Phoenix Rising Founder

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    Even if a portion of the ME/CFS population has experienced sexual abuse it will always only be a portion. The latest CDC study tied low cortisol to sexual abuse- meaning I believe that most people who had experienced sexual abuse had low cortisol (not necessarily the other way around) but 40% of their population had neither low cortisol nor abuse.

    The theory does not necessarily require sexual abuse; it could concievably relate to any kind of trauma- even an infection. The CDC is doing a study that looks at early history intensively; doctor visits, infections, injuries,..... to see, as I remember, if there is an increased risk of stress causing events in childhood. Of course they're still using the empirical definition - Reeves big bugaboo.

    You also have take into account the fact that they Empirical definition really does appear to bring in alot of new patients. They are still ill - but they no longer have to fit the fatigue parameter. How many of the abuse victims were in that group?
     
  12. JanisB

    JanisB Senior Member

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    One thing that could make a difference is Marty Pall's theory of unexplained illnesses. Childhood sexual abuse, and adult sexual abuse, and emotional abuse of all kinds -- any kind of abuse over an extended period of time -- is likely to cause PTSD. And PTSD, like ME-CFS, MCS, and FMS, involves a vicious cycle with high levels of peroynitrite, an antioxidant that damages the lipid membranes of cells. All nerve cells are largely lipids, and extremely sensitive to peroxidation.

    PTSD often leads to illnesses that look a lot like ME-CFS, such as Gulf War syndrome. It is unfortunately miscategorized as a mental anxiety disorder and treated with talk therapy, which is largely ineffective.

    In any case, I think the hoopla about sexual abuse is a waste of $$$ and time unless research advances to the point of looking at how abuse damages the oxidative regulation of the body, its energy production and signal production. B12, as Freddd suggests, plays an important role, but it is not the cause or the cure for a large majority of individuals.

    Janis
     
  13. Freddd

    Freddd Senior Member

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    Ji Janis,

    an important role, but it is not the cause or the cure for a large majority of individuals. its energy production and signal production. B12, as Freddd suggests, plays


    You have a major understatement and misunderstanding here. First b12 "crashes" can be triggered by any and all kinds of stressors including physical trauma, bacterial, viral, vaccine and for all I know emotional/psychological abuse. Once triggered it's like the person can never dig back out of the hole. It can start with an injury from a car accident and be all downhill after that. I was certainly subjected to that. My mother was an abusive psychotic. The two kinds of b12 play over 600 roles in every system of the body, enegy production is just one. The neurological , immune, digestive, pulmonary, cardiac and all other systems of the body. Look at the list of symptoms, and that isn't complete. I would love to run a controled trial on this one. In this, people respond based on symptoms, not diagnoses. For the people with a large assortment of the symptoms on the list very significant response to both active b12s with methylfolate, basic cofactors and critical cofactors as I have specified is in excess of 80% and it's a rare person who has these symptoms who doesn't have at least some response. Maybe a factor is that the unbound active b12s stimulate a healing response regardless of the cause.

    Brainfog, neurological pain, widespread body pain, exercise intolerance, IBS, muscle pain of multiple kinds, 18 specific tender muscle locations, severe unrelenting fatigue, etc all respond reliably and with varying degrees of quickness to the appropriate combination of the two active b12s of the tested brands taken in the specified manner with methylfolate and the specified basic cofactors and specified critical cofactors. Some things happen almost instantly and some types of things take longer. Individuals often require some fine tuning. For instance some people require quite a different ratio between the two active b12s than other people. When one is working through the permutaions and combinations of critical cofactors you never know which one will be a jackpot and which other ones it must be combined with to work. People use wrong methods and don't get results. I've had people do it wrong 5 or 6 times and just absolutely refuse to actually do as I suggest that you ought to try it before you say it doesn't work. However, don't change the recipe by taking different brands, inactive b12s, no methylfolate etc etc etc and then say it doesn't work. I have spent the last 6 years working out many of the kinks as to why it doesn't work. I have found a lot of ways a person can go wrong and very few for it to work predictably and reliably in most people.

    I had a classic case of CFS/FMS. There was no disagreement at all about that once it became an acceptable diagnosis. I was treated as if it was all in my head for years by lots of docs which is a common experience here. I got onto the methylb12 because of the neuropathies I also had. I was totally surprised when it actually cleared up the CFS/FMS far more quickly and easily than the neuropathic symptoms, some of which I am still affected by. That most of the symptoms were caused by b12 deficiencies was not at all obvious to anybody except in retrospect. Now, in retrospect it is an easy analysis to see how all the pieces fit together. Yes, I had my suspicians about some of the symptoms as early as 1978 but was told I was wrong by 100% of the doctors 100% of the time. I was diagnosed with idopathic neuropathies. Many of the doctors just assumed I was actually a secret alcoholic, very common here in Utah in the Mormon culture, perhaps like that woman in the car crash who turned out to be drunk recently. That was considered a totally different thing from all the traumatic neuropathic injury I also had and the mutitude of times I was diagnosed with FMS/CFS.

    Is it such a terrible thing if CFS/FMS turns out to be treatable? Doesn't it seem unlikely that 100% of the symptoms and onset characteristics would match up with and respond as if it is this stealth deficiency syndrome of a dozen or so factors if it isn't?

    As these symptoms can be found easily in people with serum cobalamin levels under 2000-3000pg/ml, that 2 of the 4 syndromes have no relationship with serum level at all or any other serum or urine test and are not detectable by such tests and hence can't be ruled out regardless of test numbers and so the methods used to rule out b12 deficiency are fallacious based on incorect hypotheses. It's an easily testable hypothesis unlike most of them. Take this sexual abuse hypothesis. Even if it is correct, so what? So that may be a triggering event for some people. It doesn't point out the cure by knowing that. Finding the triggering cause is pretty worthless in knowing how to treat it. I was emotionally abused. Maybe it was a factor but it isn't a testable hypothesis in terms of a cure or reliable treatment. Maybe it starts a biochemical cascade in susceptable people that ends in CFS/FMS. Now, at this end of it is where a treatment hypothesis is testable. I have all sorts of candidate trigger events. Knowing any of them or all of them gets us nowhere on treatment. I offer you a testable treatment hypothesis and you act like I'm offerring you an untestable trigger hypothesis.

    A 1-3 month trial of the correct items done correctly will demonstrate conclusively for just about anybody if they will have some degree of response. If they have some degree of response then much more can follow with adjustments and fine tuning. This is a complicated thing. Lack of response is rarely the problem. More often the response is so large that people become scared of it. The initial response often isn't pleasant so people interpret it as a "bad response". Having walked many hundreds of people through this, a heavy duty intital response indicates that it will work quite well. I haven't yet met anybody with what turned out to be an actual detrimental response. All responses are positive. It's just upsetting the applecart of sickness which can't be avoided if a person is going to get well.

    I understand a persons lack of belief in what I say. No belief is necessary. A trial will tell all. It's a testable hypothesis that doesn't require faith. It may be no more effective than the last dozen things you tried. On the other hand it may restore you to health and being able to live a normal life. I'm not selling anything. The test of this hypothesis is not going to break the bank. The 80% trial costs $60. That will leave 20% of the people who could benefit undetected because it is lacking what they need and only takes 5 weeks. But it does a test for all four of the base deficiency types including the CNS/CSF deficiency of both kinds of active b12s. It's a pragmatic test and I know of absolutely no other method to get at that. I also don't know of anybody else offerring a protocol that gets at that. I've never seen any other one that does. I can't even offer you an estimate of a percentage that might turn up with that. Some will. For that percentage, whatever it is, nothing else will help them. Japan is the only place in the world studying this aspect. They are at least 50 years ahead of USA/UK research. A lot of politics stands in the way of this ever being studied here. I couldn't wait for that. I had already waited 60 years and my life was running out. Who here can't wait another 50-100 years?

    All in all I would be very surprised if at least 50% of those here don't benefit substantially. Good health to all.
     
  14. jenbooks

    jenbooks Guest

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    Hi Freddd. I for one don't disbelieve you. It certainly works for you. I ran across an interesting book I skimmed on Google Books (parts of it) Trace Your Genes To Your Health in which the doctor requests a family tree of ailments from patients and then figures out their genetic vulnerabilities. Interestingly my bf who is very robust, has red-green color blindness & mild anemia his whole life and I think some relatives had that. Turns out this guy says that's a b12 deficiency. It isn't affecting his health in other ways though, lucky him. CFS, MCS, are just not part of his picture. In fact he has the constitution of an ox. What is interesting is that unrelated things like that can have underlying commonalities. In my case for instance, I just always wondered if celiac genes/disease (which I have) were somehow related to my vulnerabilities to either mold or lyme. There may be some overlap in the HLA types or perhaps in a tendency to autoimmune.

    My points are:

    1) I was hoping you would do a simple cheat sheet that would list step by step what to take first second third, which brand, how long to hold it under your tongue to start and how many days, what to expect in terms of effects, when to updose when to downdose, ie a very simple direct program without any attached philosophy. I still haven't put that together for myself as I've got too many stresses physical and otherwise in my life. You have stated your philosophy and it would be most helpful to me, and perhaps others, to have a very simple step by step with no philosophy just directions to print out to refer to step-by-step.

    2) I hadn't gotten into this abuse question because I personally find it boring. I can cite you the literature that indicates a blend of nature and nurture in PTSD and probably in CFS. Vietnam vet identical twins born with a small hippocampus were studied--where one vet went to war and the other didn't. The ones who went to war got PTSD and the ones who didn't, didn't. A small hippocampus genetically was a predisposing vulnerability IF you experienced a stressful situation. We know that early abuse shifts cortisol response, and we're not sure if IT alone affects development of hippocampus and other key brain organs. So, early abuse (sexual or otherwise--there is emotional and physical abuse too, and I don't see why they can't be equally as bad) can surely be a factor in later illness of all kinds. That's the point. For those with the vulnerabilities to CFS, it might play a role in that. Surely it could. IOr it might show up in other ailments. Childhood abuse has profound effects. I know firsthand. But whoop ti do. There are countless studies showing childhood abuse leads to more ailments and illnesses later in life. So what's new? Isn't it obvious that we will be affected by everything from what our mothers ate while we were in the womb, to what state they were in as well (anxious? calm), to whether they smoked, to whether we were breastfed, to whether we were loved or abused, to what food we ate, to what life experiences we encountered? The study is *meaningless*. It's a bore. :)

    Besides that, I don't ever expect the CDC to help with lyme, CFIDS, whatever. You can read Osler's Web. YOu can read Cure Unknown. Just ignore them. Nothing helpful is coming from them. They, however, are not such an interesting resource anyway. I'm more worried about (at least in the lyme community) powerful figures such as Gary Wormser who keep publishing in the New England Journal of Medicine and keep talking about 30 day cures etc. People like that have destroyed too many lives to count (and he has done it personally--I know this--from another doctor. He gave a young man with a bullseye rash 3 weeks of antibiotics and when the man worsened and became encephalitic, he recommended a psychiatric institution as he was 'cured' of lyme. Instead the young man was treated with IV and oral antibiotics for 2 years by another doc, and emerged well enough to lead a normal life and go back to work. He asked Wormser to strike that incorrect diagnosis from his record as it would follow him his whole life long. Wormser apparently refused.) Every good doctor I know (or doctor trying to be good) reads NEJM. It's places like that where we need studies to appear. Forget the CDC.
     
  15. Freddd

    Freddd Senior Member

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    Hi Jenbooks,

    You are right. I need to focus on getting the "how to do it" up. I have been searching for the 80% trial post I had made elsewhere and apppear to have lost which was exactly that. This time I'll do it in Word and then post a copy.

    I was a psych major in college and really got into physiological psychology. So having neuropsych healing going on in my own brain was an interesting experience. Early experience is not destiny. The brain can be retrained and reformed. It remains plastic.

    Blackberries are too juicy to scan well and I'm having trouble with my transporter so I can't beam them to you. Zeus hates a messy beak so after getting berries all over he spends the next 10 minutes wiping his beak trying to get every trace off. Birds have a very different brain phsiologically from mammels and it shows by how they think, not implying that mammels don't also like to be clean. They are quite alien compared to a cat or dog.
     
  16. hvs

    hvs Senior Member

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    @tomk Nailed it. Any studies that go by this and other way off-base definitions aren't worth the paper they're written on. Of course, Reeves wants to catch folks with psychological and psychosomatic problems (and god bless them, I don't want to minimize their very real problems) under the umbrella so that he can farm out CDC contracts to the Emory psych department where his friends and former colleagues work.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Interesting post Janis!

    PTSD is is a pretty much taboo subject in ME/CFS unless someone like Martin Pall brings it up. Since I'm pretty clear that my system is on alert pretty much all the time I don't have trouble with a PTSD like scenario. The question for me as for you is tracking down physiological parameters of the illness. I've done Amygdala and its definitely helped. I've done meditation and it's helped. I've done my own Neuro- Reprogramming Technique and it definitely helps. I feel better but I still go on these mild walks and feel like crap the next day!

    We need to get down to the physiological basis of this disorder. Freddd I'm definitely going to give your idea a try. I recommend that you start up a group (social group) on the website of people going through your protocol. That would give us a way to easily monitor peoples progress and for you to interact with them.
     
  18. Freddd

    Freddd Senior Member

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    Hi Cort,

    PTSD is is a pretty much taboo subject in ME/CFS

    Why taboo? I too have sufferred from PTSD and it seems largely to reflect neurological changes from the deficiencies I've been talking about which appear to increase vulnerabilty to these changes. I'm not minimizing the effects of meditation as I have done so for a long time and engaged in spiritual Alchemical work for decades.

    I recommend that you start up a group (social group) on the website of people going through your protocol. That would give us a way to easily monitor peoples progress and for you to interact with them.

    Sounds like a good idea. How do I do that? Start a thread specifically for that purpose or is there something else?

    I've posted a link to Dr Neubrander's presentation on his protocol and experiences with autistic children and methylb12 and cofactors that you might find interesting http://forums.aboutmecfs.org/showthread.php?p=2387#post2387. I'm working on the step by step Jenbooks requested. I found what I was looking for and am updating and expanding it.

    On the exercise question, in addition to the supplements, I've found two things that have provided incremental benefits. One is daily whole body sun exposure for 20-30 minutes on each side, say an active hour in the sun without sunblock, mad dogs and Englishmen and all that. The difference is apparent in about 10-15 days. The other thing is taking the exercise at higher altitude which forces more hemoglobin development. This improves oxygenation of blood and tissues. It helps if you have a convienient mountain. Some folks even sleep "at altitude" to simulate that with a controled lower partial pressure of oxygen. My sister moved to 9700 feet in Colorado for her kids to improve their ski racing. When you go to the lowlands it's like being supercharged.
     
  19. jenbooks

    jenbooks Guest

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    Sun Exposure NYC

    Glad you're starting that step by step.

    Re: whole body sun exposure, I can't quite picture that in NYC...I do try to get out every day although I haven't yet today, and sit for at least half an hour. I think the body's own Vitamin D is far better than D3; I don't tolerate the supplements well anyway. In addition, the infrared is good. That's why I wonder if there are different benefits in morning or afternoon but I generally go in the afternoon.

    The issue is the weak sun from November through the end of February. There is no Vitamin D in it. However there may be other benefits.
     
  20. Freddd

    Freddd Senior Member

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    Hi Jenbooks,

    Re: whole body sun exposure, I can't quite picture that in NYC...I do try to get out every day although I haven't yet today, and sit for at least half an hour. I think the body's own Vitamin D is far better than D3

    I have a private back sundeck, patio, hottub and right now about 60% of the back yard private enough for sunning and nudist entertaining from mid May until a heavy frost. Two tarps of sunscreen can include the rest of my back yard. Unfortunately my garden isn't included in that. I think that the D our body makes is superior as well though I couldn't tell you why the difference. I've never lived in anything like NYC though my grandmother had a private courtyard with her Pine Street townhouse in Philly.
     

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